World Thalassemia Day 2021 Addresses Health Inequalities Across the Global Thalassemia Community

World Thalassemia Day is observed on the 8th of May globally to raise awareness about Thalassemia disease and renew our promises to keep fighting until the final cure for the blood disorder is found. The day also strives to promote and strengthen patients’ lifelong and difficult struggle against this severe blood disease.

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What is Thalassemia?

Thalassemia is an inherited blood disorder that is characterized by decreased or damaged hemoglobin production in the red blood cells (RBC), thereby leading to anemia. The red blood cells consist of an iron-rich protein called hemoglobin that carries oxygen to all the body organs and tissues. It occurs when the body’s DNA that is responsible for making hemoglobin, undergoes mutation (genetic errors). This mutated DNA is then passed on to the next generation (inherited).

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Types and Manifestations of Thalassemia

The disease is most common among the Mediterranean, South Asian, and African ancestry. There are mainly two types of Thalassemia– alpha and beta with different genes being affected for each type. Both alpha and beta-Thalassemia may be found in the following forms:

• Thalassemia major: Symptoms usually appear during the first two years of life with severe anemia, slowed growth, delayed puberty, and other health problems.
• Thalassemia intermedia: This causes moderate to severe anemia Thalassemia minima (or Thalassemia trait): There are few or no symptoms.

The symptoms of Thalassemia may range from mild to severe and life-threatening symptoms like drowsiness & fatigue, pale or yellow skin tone, delayed growth, lowered immunity levels, iron overload, chest pain, and heart diseases.

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World Thalassemia Day 2021

The Thalassemia International Federation first established the “International Thalassemia Day” on the 8th of May, 1994 in loving memory of George Englezos and all Thalassemia patients who are no longer with us.

Since then the Thalassemia International Federation (TIF) organizes diverse activities for World Thalassemia Day, with a mission to spread the information and management strategies of Thalassemia.

The 2021 theme – “Addressing Health Inequalities Across the Global Thalassemia Community” continues to deliver the mission of TIF with the following objectives:

• Draw attention and raise awareness about the disease and its symptoms and methodologies to cope with it.
• Pre-marriage counseling to the patients who are suffering from Thalassemia.
• Redress misconceptions about vaccinations and spread the importance of vaccination for a better world.

World Thalassemia Day Activities

Various actions are taken every year around a particular theme to promote the prevention, learn the management or treatment of the disease in a patient-centered manner.

The activities and events are usually organized in public places like schools, colleges, educational institutions to draw the attention of people towards the disease, its symptoms, and preventive measures using posters and banners.

Competitions, marathons, art exhibitions, blood donation camps, debates on health-related subjects, discussion about Thalassemia and the patient’s quality of life, distribution of educational materials about Thalassemia are also done.

Management of Thalassemia

• Simple blood test – Hb electrophoresis or Hb A2, helps diagnose Thalassemia
• Although it is difficult to prevent Thalassemia , it is a treatable disorder
• It is generally managed with blood transfusions and chelation therapy. In certain cases can be cured by bone marrow transplant
• People with Thalassemia can lead a long and productive life with proper management of the disease
• Universal immunization to Thalassemia patients helps prevent exposure to infections
• Avoid high iron content foods as frequent blood transfusion is required
• Maintain a healthy diet and routine exercise

Facts & Figures about Thalassemia

• Almost 7% of the population worldwide carries an abnormal hemoglobin gene of Thalassemia
• People living in low and middle-income countries contribute to 80% of the affected population
• More than 4 million Indians are Thalassemiacarriers and more than 1,00,000 are patients, making India rank the top list of Thalassemia
• Appropriate & timely blood transfusions and iron chelation therapy are globally received by less than 20% of people with β-Thalassemia
• Access to multidisciplinary care and reference centers lies to less than 5% of patients with β-Thalassemia patients globally

Hence voluntary blood donation must be prompted to address the needs of the patients with Thalassemia major. This may help them lead uninterrupted life with sufficient blood transfusions for survival.

References:

1. International Thalassaemia Day 2021 - (https://thalassaemia.org.cy/category/international-thalassaemia-day/itd2021/)
2. International Thalassaemia Day - (https://www.nhp.gov.in/international-thalassaemia-day_pg)
3. Thalassemia: Complications and Treatment - (https://www.cdc.gov/ncbddd/thalassemia/treatment.html)
4. Beta Thalassemia - (https://www.hopkinsmedicine.org/health/conditions-and-diseases/beta-Thalassemia)

Source-Medindia